FAPG Links Directory

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Links Directory:
Accessibility and Aids to Daily Living
Ataxia Mailing Lists and Internet Support
Ataxia Organizations, International
Educational Resources
Friedreich's ataxia
General Disability
Kids, For and About
Service Dogs
Travel
Wish Organizations and Recreational Opportunities

Accessibility and Aids to Daily Living
AbilityHub -- a website for people with a disability who find operating a computer difficult.
Accessible Home Designs -- 77 plans using universal design
Accessible Manufactured Homes -- Mid South Manufactured Homes, Villa Rica, Georgia
ABLEDATA -- assistive technology and disability related resources at your fingertips
Bed Pullup -- pull yourself up in bed with ease
Bed Rails --  a barrier for the edge of the bed, secures under the mattress.
LiftVest -- adjustable vest of straps that can be used to aid transferring and lifting
Resource List -- Paraplegia News, the magazine for wheelchair users
Roll a Ramp -- lightweight, easy to put away
Rollx Vans -- accessible vehicles
Speed Laces -- laces for shoes that do not require tying
Superpole -- floor to ceiling pole for transferring and balancing
THERATOG -- a revolutionary orthotic undergarment that gives people with sensorimotor impairment and exciting new modality for improving postural alignment and stability, movement skill and precision, and joint stability. 
Turtle Homes -- accessible modular homes
Uribag -- secure and discreet pocket urinals for men and women

Ataxia Mailing Lists and Internet Support
A-APG -- "Advanced Ataxian Parents' Group". There are discussion/information/question topics for the parents of more advanced ataxians.  
A-Parenting List -- a mailing list for adults with ataxia, raising children - email info
Ataxia Chat 2002 -- Topic chats, message board, photo album, website archive for anyone interested in ataxia. 
Ataxia South Africa -- International online support group for ataxians, email Lara for more info
Children With Ataxia (Parents List)-- web list for parents of children with cerebellar degeneration
FA Babel Family -- an independent multilingual mailing-list for all people coping with Friedreich's Ataxia in Europe and worldwide.
FAPG -- Mailing list for parents of children with Friedreich's ataxia or other early onset ataxia.
FA Research Emails -- purpose is to receive only research information, no personal support (Go to FAPG, A-APG or INTERNAF for that).
FA in SA -- Friedreich's Ataxia is South Australia blog
FAYoungPersons List -- This is an e-mail list for young people with Friedreich's Ataxia, or any other diagnosed or undiagnosed Ataxia. There is no age requirement, just a "guideline" of under 30.  For more information email
INTERNAF list -- Information and instructions for joining the International Network of Ataxia Friends, an e-mail support group list for ataxians, their friends and family.
L-APG --"Loss of Ataxian Parents Group". There are discussion/information/question topics for the parents who have lost a child to ataxia, or have a child nearing death.
Late Onset FA List --LOFDRA, a mailing list for adults with late-onset FA
NAF Message Board -- Click on the door to enter message board, register yourself, scroll down to Medical/Health, then click on Ataxia
Spouses of Ataxians -- A place only for spouses of ataxians to learn, grow and be supported.  For this group the definition of "spousal" shall be: committed relationships where two people are perceiving each other in a "spousal" way and acting that out in daily life. 
TRAVABLE is a listserve for people with disabilities to share travel experiences/recommendations/etc.  Email with the subject line saying <subscribe TRAVABLE anonymous>.

Ataxia Organizations, International
AA -- Friedreich's Ataxia Association of NSW
Atassia di Friedreich (Italy; in Italian)
Ataxianet List --  Portuguese mailing list for Friedreich's ataxia
Euro-Ataxia -- European Federation of Hereditary Ataxia - email info
French Association for Cerebellar Diseases -- Contact: Thomas Bourgeois 
French Association of FA -- also includes information on a French mailing list for FA
Go FAR - Friedreich's Ataxia Research Petition (English and Italian) 
Greek Friedreich's Ataxia Support Group -- includes other kinds of Ataxias and rare genetic neuromuscular disease.
Hispano Ataxia -- Miguel A. Cibrian's spanish WebSite on ataxia
Portuguese FA Page -- Leonardo Scardini's Portuguese WebPages for Friedreich's ataxia
Svenska ataxiföreningen --Ataxia Association of Sweden
 

Educational Resources
Online Video and Slideshow Presentations about Friedreich's Ataxia
Read the IDEA law -- pdf document
How to Develop an IEP
Assistance to States for the Education of Children with Disabilities
Student Advocacy Center

Friedreich's Ataxia
A message for newly diagnosed  FA patients and their families  -- on FARA website
Anesthesia, Coping with in neuromuscular disease -- Quest Vol.7 No.3, 2000 MDA
Ask the Experts (FA) -- MDA
Cardiomyopathy, hypertrophic --- Explanation in lay terms
Chris's Exercises -- Suggestions from an adult with FA
FA Carrier Info -- FA Profile including carrier information on FA (geneclinics.org)
FA Case Study -- Department of Neurology, Baylor College of Medicine
FA Information and Links Page -- FAPG members contribute
FA Patient Database Registration 
FA Research Timeline -- Internaf
FRDA -- National Institutes of Health, detailed research report on Friedreich's ataxia
Frenkel's Exercises for Ataxic Conditions
Friedreich's Ataxia (Facts About) -- MDA
FA-FAQ -- National Ataxia Foundation
Gabe Ford -- Motivational speaker with FA presents topics of school bullying and violence in schools.
INTERNAF homepage -- A valuable research and support network for all ataxia.
INTERNAF News -- a monthly newsletter that presents more than medical research.....it also explores the human side of ataxia, bringing you inspirational thoughts, practical ideas, and humor to help you cope.
Keep a-Goin' -- Stories by Ataxians and their Loved Ones, 25% of sales goes to NAF for research
The Mass-Cal Project  -- Purpose is to raise funding for FA research.  Includes support forums for those with Friedrich's ataxia or the family and friends of people with Friedrich's ataxia to support one another.
MDA USA -- Information on Muscular Dystrophies and other neuromuscular disorders.
Mitochondria -- illustration and explanation of mitochondria from mdausa.org
NAF -- National Ataxia Foundation's homepage (USA)
Parents of Recently Diagnosed Ataxians Guide  presented at the 2003 NAF Conference
Quest -- MDA's bimonthly national magazine containing news and features on living with a neuromuscular disease
Seek A Miracle - New York, Sam Litke: email
Testing Centers for FA (DNA) -- geneclinics.org
Trinucleotide Repeats in FA -- Genotype-Phenotype Correlations, CAG diagram

General Disability
ADA Information -- listing of various government webpages on Americans with Disabilities Act
Exceptional Parent -- Online resource guide for parents of children with disabilities
Independent Living Centers are private, non-profit, consumer-controlled, community-based organizations providing services and advocacy by and for persons with all types of disabilities. (Search by state)
MELAS -- comprehensive listing of mitochondrial diseases
National Caregivers Foundation
National Institutes of Health -- English
National Institues of Health -- Spanish
Our-Kids -- Devoted to parents raising special kids with special needs.
Pediatric Database of Ataxic Disorders -- A group of disorders characterized by disturbances of gait and coordination. 
Social Security Disability Programs
SPEAKING OF SEX: Common Myths About Sex And Neuromuscular Disorders Quest Magazine (1998 Equality, Dignity, Independence (EDI) award)  
Talking Glossary of Genetics --  a multimedia glossary to help people better understand genetic terms and concepts from the NHGRI
Through the Looking Glass -- Clinical and supportive services serving families in which one or more members has a disability or medical issue

Kids, For and About
Smile Quilts --  Virtual online quilts for children with terminal or life long illnesses (no charge)
The Sibling Support Project -- Children's Hospital and Medical Center, Seattle, Wash.; The project maintains a complete data base of nationwide sibshops.
Wrightslaw.com -- Featuring effective advocacy for children with disabilities

Service Dogs
Canine Companions for Independence -- Nationwide centers
Canines for Disabled Kids -- assistance dog programs for children under age 12
Canine Partners for Life -- Service dog agency in Cochranville, PA
Canine Helpers for the Handicapped (CHH) --in Lockport, NY

Travel
Access-Able Travel Source -- Check out accessibility before you travel!
Accessible Journeys -- Offers group tours and cruises for mobility-impaired travelers and maintains a list of nurses available for hire as travel companions.
Diabetic Traveler Newsletter
Emerging Horizons -- includes a wide range of accessible travel resources; including information on accessible recreation, transportation (van rental), destinations and free access guides. 
Global Access -- lists travel books and Web sites for the disabled and provides a forum for disabled travelers
Guided Tour --  Tours for people with mental or physical disabilities.
Society for the Advancement of Travel for the Handicapped
Mobility International USA -- Coordinates international exchanges for people with disabilities
SPLORE -- Nonprofit wilderness recreation for people of all abilities; rafting, skiing, rock climbing, canoeing
Wheelchair Friendy Inns -- Listings by state
Wilderness Inquiry --  Adventure vacations for disabled travelers in U.S. national parks

Wish Organizations and Recreational Opportunities
Directory of Wish Organizations
Adaptive Sports Listed by State --National Sports Center for the Disabled
Children's Wish --Atlanta Wish organization
Dream Foundation  -- National organization granting dreams to terminally ill adults
Fishing Has No Boundries -- a Wisconsin-based non-profit org which runs fishing trips for people with disabilities
Hunt of a Lifetime -- a nonprofit organization with a mission to grant hunting & fishing adventures and dreams for children, age 21 and under, who have been diagnosed with life threatening illnesses.
Make a Wish Foundation -- Granting "wishes" to children up to age 18
Sunshine Foundation -- Granting "wishes" to children with life threatening illness, up to age 21


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